Oh I'm totally with you. First 6 months after my PE, I ran to the doc all the time. I'd say it all got very old about a year or two out and now I've learned what seems urgent, what I think I can give a couple of weeks, etc and only go when absolutely necessary which is not often.

What I do now that I didn't before my PE is change the way I talk to my doctors. I act more like a participant in my care and as a partner with my doc. I'm a much more self assured, confident patient.

I'm much worse about going to the doctor now. And actually I was in some kind of weird zone even shortly after diagnosis - I didn't really go beyond the regular follow up stuff I was constantly given. I get overwhelmed/exhausted/sick of the dr process very quickly so I don't do well with having to keep up appointments. I used to be a lot more vigilant about unusual pain, tried to take good care of myself, etc. Now I just don't care any more. Somehow, even though I was actually right (and the doctors wrong) when I kept saying saying I thought I had clots, but the doctors kept telling me I was fine, it's just destroyed my confidence in my own perception of my body. So I have this really negative attitude that whether something is wrong or not, it's just a waste of time/money/effort to go to the doctor, because I think they're going to tell me everything's normal, even if it isn't! If I were just myself and didn't have kids, I don't know that I'd bother going to the doctor much at all, even when I think something is seriously wrong. There are times I feel like it's just a losing battle, no matter how hard I try to take good care of myself. So, basically my family has to force me to go to the doctor when I'm having problems, I'm extremely stubborn on this point. And the only reason I even eventually give in is because I've got two little kids who depend on me, and I couldn't feel good about myself as a mother if I didn't try to take some sort of care of myself. I think in a weird way also, having basically faced death, well I'm not scared of it anymore, so again, if I didn't have people depending on me, I wouldn't care that much for just myself.

Well that all sounds hugely depressing!

Yeah, that's part of it too. I was pretty close to death, and actually when I collapsed from my PE, I told myself, this must be what it's like to die. So I too don't look at death quite the same way. I used to be very frightened of dying, but now I see it more as an acceptance that I'm a mortal being. I certainly don't want to die and will do my damnedest to not die, Ha! But it's not the first thing that pops into my head any more when I don't feel well.

I saw this interview Larry King did with Doctor Kevorkian and I don't remember this part verbatim, but Larry King asked him something like, "are you afraid to die?" And Dr Kevorkian responded something like, "I'm not afraid, but I am concerned about death." I thought that was an interesting thing to say and I get it. I am not hugely afraid, but it is something that I do think about periodically, and have concerns about in terms of how will I die, what will I feel, what happens to my body during death etc. I think the idea death for me has become more a curiosity vs something I need to panic about.

I have a more matter of fact view on death vs the overriding fear, and that's why I don't rush off to the doctor all the time now. I know realistically, based on odds, most things aren't going to kill me on the spot, with the exception of a PE, and I did go to the doctor with my PE symptoms and it got me no where. I was ignored by 3 different doctors, so what's the difference if I had gone to the doctor or not, in that instance.

Interesting discussion you ladies started!

I know what you mean about the fear of dying kind of disappearing, it's more of an acceptance that at some point it will happen, I'm not scared, just not ready. What I don't like is knowing that the world will go on without me, people will go about their usual business and I will be missing it all. How pants is that........I think an experience like we have all had just makes you live for the here and now.

This is an interesting discussion. I don't shy away from making appointments to find out more about something that is going on with me that I don't understand. Being on Warfarin and having had a PE definitely gives me more physical situations that might lead to an appointment. I also keep my annual appointments that seem to be growing in numbers as I get older.

I'm three months out since my diagnosis. I'll be interested to see how my thoughts and behavior evolve over time. I feel like I'm in a phase where I'm trying to do the right things and proactively address some health items that might make me happier / healthier in the long run. My knee surgery which led up to my PE was part of this. I may not be choosing any elective surgery in the future.

The one thing that never actually crosses my mind is concern about dying. Even when I had excruciating chest pains, I didn't want to go to the doctor. It never occurred to me that what I was feeling was life threatening...even as I was being told I was being transferred via ambulance to the hospital.

Well, I'm still in the more likely to go to my doctor group, but am getting better. I have unfortunately not made it to the point of accepting the idea of dying, and still have a terrible fear of it. Not sure how to get over that one exactly, but hopefully I'll get there! For now my doctor is happy that I have this ridiculous fear of dying becuase she doesn't have to worry about me becoming suicidal with the anxiety and depression that have come along with this whole PE situation.

I'm so glad that rmb correctly interpreted what I was saying, because I didn't mean to sound suicidal or anything, although I am currently feeling quite frustrated about my health, so that probably affected the tone of what I wrote before. But just addressing another part of the question Toss originally asked, does our frequenting the hospital or doctor's office change over time, and I think it does. I think there are varying reasons for it too.

I do think in the beginning most people are kind of on 'high alert' and hit the panic button pretty quickly because of having been in a life threatening situation, I think it's kind of normal to somewhat react to the pain or other issues we have a bit more strongly in the beginning because it's out of the realm of what we're used to. I always say that problems which would have previously taken me to the hospital are now just like a part of my normal routine. It's definitely necessary to learn how to guage the seriousness of whatever we feel out of the ordinary, try to remove fear from the equation, and make the decision solely on physical necessity. That's a pretty hard thing to do in the beginning, and I think we all kind of have to feel our way to that point.

I've always been proactive in caring for my health ever since my PE, I kept every appointment and did every little thing my doctors wanted me to, so it's not as if I've neglected myself. But I know, for instance, that when I have felt DVT pain (which I pretty much recognized from the first moment I felt it) on two subsequent occasions since my first PE, I didn't go rushing to the hospital. I get a lot of strange aches and so I try to give it a little time hoping against hope the pain goes away. However, I have gone to the doctor once I felt sure that it was more than momentary pain. But I also have an IVC filter which gives me a little bit more security in terms of protecting against PE too, so I haven't worried that I'd suddenly drop over dead from PE just because my legs hurt. I probably would not wait to seek diagnosis if I didn't have that safety net.

My stubbornness in staying away from doctors has come about I think more from the extent of neglect that I've experienced. For over a year, I did report particular ongoing symptoms to my doctors, and especially got pushy about it when they continued more than a year into recovery. I knew things didn't feel right, but I was pretty much constantly patted on the head and told I was fine, or that perhaps the problem was just anxiety. So I just felt that it was useless for me to further push these problems when nothing got done anyway. Probably not a good call, because my husband constantly tells me that I have a really hard time admitting that pain is unbearable, and that I'm too happy in general so the doctors have trouble believing that I'm feeling bad to the point of needing further investigation or treatment, even when I'm using the right words. So in my case at least, general neglect has kind of created the way I am now.

The other thing I think is that I can tolerate ridiculous pain now. It's like I just compare whatever I feel to the worst of what I felt during recovery from PE, and since basically everything pales in comparison to that, I tend to think I have no right to complain. So I tend to just brace myself against it and wait for it to diminish.

It's interesting to me too the different reactions regarding death. My personal opinion is that at least in part that hinges on the difference between being in a life threatening situation, and experience near death. Without a doubt, everyone who's had PE was in a life-threatening situation, but not everyone really came close to death, and there are physical changes that happen at that point. That was the place where I lost my fear of it, for better or worse. I would never seek out dying, but the idea doesn't scare me, and there are certainly times when I feel like I'm in some kind of no-win situation with my body (which seems determined to clot), so there's a piece of me that would just love to go on with my life and act like nothing is wrong, not take stupid medication, and let whatever happens happen. But that would be a luxury I'd only have in very different life circumstances than I have now. So I continue to plod on, take medication, see the doctors, get testing, whatever, trying to find my place in a life very different than I always imagined.